dwindling drum roll

I wish I was asking for a drum roll to deliver great news about Yuri but I'm not. If you were doing an anticipatory drum roll you can stop. I'm sorry my spirits are low today. I am trusting God that He is going to work all this out for His glory.

We had the much anticipated Geneticist follow up appointment yesterday to go over all of Yuri's labs and MRI. We were so hoping for answers. Everything came back normal except that his pituitary gland is underdeveloped and so are his optic nerves. He has all but one of the symptoms of Septo-optic dysplaysia. However SOD wouldn't account for all of his symptoms and most importantly his mental delay.

So now we see more specialist. Because of the anomalies of his eyes he does have poor vision we just don't now how poor. We are going to the Ophthalmologist tomorrow a fact I excitedly told the Doc but he said there is nothing that can help this type of vision loss.

We also ran two more labs, one is an expensive long shot and the other won't tell us anything really. Josh and I are just grasping at anything for answers, for a little peace.

Yuri was his normal self for the entire visit yesterday and he had everyone's attention because he was so loud and unhappy. When we were trying to talk to the doctor we could barely hear him over Yuri's noise. The nurse made a comment about it and Josh said this is normal from, 7:30am to about 11:30pm he is constant motion and noise, if he isn't making the noise himself he is making someone or something else make the noise. I was almost in tears at the 'no' news and the nurse understood.

It felt so good to have someone really understand how hard Yuri is. She walked us down to the lab and she told me that she has been doing 'this' a long time and something has to be going on with Yuri that can be fixed or helped.

Yuri bangs his head on this in order to push the button to make it light up and play music.

This was the first toy he ever played with and didn't immediately throw.

He is cute!

This was before he took all the letters off the fridge.

Remember how hard the orphanage visits were for us. How exhausting? We thought it was because the boys didn't see us as their primary care givers and we were still in the orphanage. I now realize it was just Yuri. I would never try to just sit and play with Yuri for 2 hours right now, it would be miserable for both of us. But yet that is what we were doing everyday sometimes twice a day. Anyway that was just a revelation for me. I'm off to make more phone calls.

My precious Bohdan

From what I know, Bohdan was diagnosed at birth with Trisomy 21 and was left at the hospital. He was transfered at birth to the orphanage where he survived in a crib for the next 3 years of his life only doubling his weight. What does this mean? It means that he was never held. He was never cuddled or had the chance to look up into a loving face and feel secure in someones arms. It means that to him physical contact was a negative thing and very rough. It means that he has always comforted himself. It means that he has never fallen asleep in someone arms. He has always fallen asleep alone.

But guess what! We serve an awesome and mighty God who had different plans for this precious angel, tiny and forgotten yet so full of love and life if given the chance.

We were in church with our twins, Caius and Bohdan (everyone thinks they are twins because they are the same size even though they are separated by a year and ten months) yesterday. Nick and Lyndsay were holding them. Bohdan started crying which is very uncharacteristic. Lyndsay gave him to me and I tried everything but he was just not happy. So we just snuggled. He finally calmed down and lay there trying not to go sleep. He would open his sleepy blue eyes and look up into my eyes and then slowly close them again. He fought going to sleep but finally he drifted off. Every once in a while he would open his eyes to look at me. I figure he was checking to make sure I was still there. Then he relaxed and went into a deep sleep. His body went limp and he started breathing slowly and his little blue eyes were opened just enough where I could see they were crossed. He was deep asleep in his Momma's loving arms and he was content and I was in heaven.

thoughts...

I can throw an amazing party! Huge party! Granted they aren't much fun and I'm the only participant but I throw one great pity party! I mean REALLY! I have four children under four if your talking about age. Developmentally I have 3 under 1 and 1 under 3. My husband works long hours and we don't have any family in town. We are trying to sell the home we moved out of and it is taking years. Plus we are so close to closing and then we find a skunk living under the house and it was broken into but we are too far away to help. Our youngest son has had two open heart surgeries in the last year and has been hospitalized numerous times with congestive heart failure. Not to mention the two children we just adopted are severely underweight and developmentally delayed and one of them is out of control. He is older and we are having a hard time getting him help and he is having a hard time adjusting and...... you get the picture?

You know what? IT DOESN'T MATTER!! IT IS A CAKE WALK!

Ok before you think I've totally lost it....... I finally got a bit of time to jump on Facebo0k and WHAM! My little puny reality just faded into the distance. Its enough right? If we help those adopting. If we support those adopting? If we give of our time and our money? It is definitely enough if we actually adopt a child especially a special needs child. Throw on an extra and that is double points of enough. If thats not enough, then the fact that one is tremendously hard to deal with and I have no time to even connect with the outside world. That's enough right? Just cross that out on the 'TO DO' list and move on.

Oh that is so pathetic and so wrong.

I thought Bohdan was tiny but there is baby that was just brought home. Her name is Carrington and she is 3 years old and weighs 11 pounds. She is in the hospital fighting for her life. She is so malnourished her body is shutting down. Click her name for her story.

Then there is Kirill. Handsome Kirill. I have often looked at his picture on Reece's Rainbow. He has a Mommy and Daddy who love him. Who have held him, and kissed him and hugged him and yet the judge said 'NO.' NO?............ They are appealing the judge's ruling. There is also another family coming before this same judge soon. click on his name for more of his story.

Then there is Landon. Landon has gone to live with Jesus. Just like Nikita. Click here to see those who have gone to Jesus never knowing love this side of heaven.

After we had visited our boys a few times and were told that court was going to be delayed I sent out a plea for prayer. I was so scared of what might happen to them during that time. They were so sick and frail. I read a blog today and it put it into perspective. We always talk about how these orphans are living on borrowed time well that is not true, not by a long shot! They are surviving on borrowed time. My little Bohdan was just surviving and now he is living! He is cruising the house and getting loved on and played with. Before, my little angel just layed in a room, in a crib by himself for years just hanging on. FOR YEARS!!!

We need to storm heaven. This battle is not of flesh and blood. There are actual souls, BABIES, just surviving, waiting, wanting to live and to love. Even Yuri who I thought didn't care, he cares. He is trying so hard to be a part of this family and connect. He is seeking out interaction and is even trying to say, 'mama'.

So what am I saying? Thank you all for your prayers and support. Thank you Lord for my four boys. Thank you that Yuri and Bohdan are on the road to recovery. Thank you Lord for modern medicine and that Caius' and Bohdan's hearts were fixed. Thank you Lord for saving these two precious angels. Thank you Lord for slapping some sense into me that this is not over there is still so much to do.

So my life is cake and all my fuel for my pity parties are gone. I'm not saying that can't come back but wallowing in my self misery just won't work any longer and I, we, have to keep on going, keep on spreading the word about these orphans. Keep storming heaven for these families. And keep these precious forgotten children in the front of our minds because compared to their existence our lives, even when they are rough, are nothing compared to their lonely lives of surviving day to day.

ok and yes yes pics are coming soon. :0)

MRI and the aftermath

My girlfriend Tracy and her son Aidan left yesterday while Yuri and I were at the hospital. Bohdan just fell in love with Aidan, Aidan held him all the time and Bohdan loved every minute.

We arrived at the hospital on time at 10:45am. The MRI was scheduled for 12:15pm. Yuri hadn't had anything to eat since the night before and then only pedialite at 10:05am so he was on the verge of a breakdown. The nurse took us back around 11:30am to get ready for the anesthesiologist. He was EVERYWHERE!! They kept asking "is this normal for him?" "Does he always move this much?" YUP!!! They kept asking all these questions about his history and most of the answers were "I dunno." I wasn't much help. I did tell them however that the sedative I tried to use on the plane just barely worked. They asked if he had sleep apnea. I said yes. They asked "diagnosed?" I said "Mommy diagnosed." "But not really?" I told them that I am 99% sure he has sleep apnea (no idea how to spell this).

So the anesthesiologist told me that she will give him the IV sedative, if he is still moving or has sleep apnea then she will have to give him a general and use a tube to breath for him. She said we would stay 2 hours after if just regular but if they have to do a general then we will have to stay 4 hours!!

I told her that he does have sleep apnea and that I figure they will need to do the general. (but I'm just momma, I don't know what I talking about.) So they give him the first sedative........ nothing, they give him another dose and he stops moving as much so they wheel him away saying that it will only take 35-45 minutes. An hour and a half later they call and say that he was moving on the table and they couldn't get a good picture between that and him snoring and him stopping breathing!! So they had to give him a general and redo some of the MRI.

So when I finally get back to see him the nurse tells me "Wow! he is hard to put under. Next time he needs something like this just tell them to do the general because the sedation doesn't work on him. You also need to get a sleep study done because he probably has sleep apnea."

.....

What do you say to that? I should have said "Here's your sign." "I know you aren't going to understand this but that muffler is gonna be hot!" (another quote, I can't help it)

Anywho we didn't leave until 7pm. I was not expecting to stay ALL day long. Well I wish that would have been the end of it but it wasn't. Since we had company we moved Yuri into our closet to sleep and needless to say we have not been sleeping well at all because he makes SO much noise and talks and yells in his sleep. I was so looking forward to moving him back into his room so Josh and I could sleep. Well.... 3am he is up screaming! I tried everything and I still don't know what was going on. He screamed for over an hour and woke everyone up. So all the babies are up and sleep deprived Josh and I are befuddled. He finally quit and everyone went back to sleep. Josh and I took a bit longer because we were wide awake!

Then the morning comes and he wakes up screaming. He has been screaming for 2 hours straight now and I am at a loss. Anyway the price of this MRI was WAY more than we all expected. But today is Friday, Thank Goodness!!!

Ok, so remember Sonya. Sweet Sonya! She has a family! It is bitter sweet though. Sonya's family were adopting Dusty and Nikita but precious Nikita went to live with Jesus. Even though he is in a much better place it is still hard. Anyway they have decided to bring home Sonya with Dusty. Here is their blog, http://godsarrowsinourquiver.blogspot.com/. They should be traveling soon.

Ok remember, Julia from Yuri and Bohdan's room? Her family met her yesterday for the first time! To see pictures visit thier blog at http://schwenzerfamilyupdates.blogspot.com/

Blessings to you all and thank you so much for your prayers!! I must go find my house now. I know it is here somewhere in all this mess.

Big Amazing This and That......

Playing in water.

Aunt Robin getting some loving from her nephews.

Grandma Di wrestling with her boys.

Caius sitting up.

The water is so funny!

Asher eating the flower he had picked for me.

Caius is pushing to sit!!!! and then he sits and sits and sits all by himself! I'm so proud! He is also eating a whole thing of baby food! Yippee! Plus he has gained over a pound last month. Chunker!

Bohdan has gained two pounds since he has been home! He is also mister 'about town'. He has finally ventured off the living room rug and goes all around the house. He will army crawl to the front door when it is open. Funny thing is though that he gets stuck on the mat because he doesn't like the way it feels on his skin.

Yuri hasn't gained any weight I don't think but he is doing better over all. His manic episodes aren't as frequent but they are still around. He is seeking out attention. He still doesn't like to be held but he does like to hold your hand. He is also signing 'more'! I'm super proud!! He has an MRI scheduled for today. I was going to add that he hasn't thrown up in over a week but then yesterday we were on our way to a drive through safari with our friends from NM and while we were waiting in line to get in, He threw up all over the car. :o( Needless to say we didn't get to go to the safari. Instead we went home and my friend cleaned the car. Happy spring break! Thank the Lord for fabulous friends who give up their spring break to clean puke!

Asher is awesome and wrestles with the boys. This is a good thing with Yuri because Yuri overall likes it however with the little guys it doesn't go over so well. We keep having to tell him 'gentle!' What a 2.5 year old! This is a great age.

Anyway, gotta run. My harddrive crashed and I just got my computer back. Still trying to load all my programs and such. Can I just say YUCK!!!

traveling

for those traveling soon..... check out my traveling page, it is under construction but hope it helps.

Happy Sunday!

So we randomly got an appointment with a geneticist on Friday. It was such a God thing, He is so cool. We were having a very hard time getting an appointment with genetisist M then Thursday a nurse from geneticist S called and wanted to schedule us for Friday. I didn't argue or ask about the mix up and made the appointment.

The genetticist said he doesn't think it is a metabolic disorder but he had a lot of ideas and was a plethora of information. He is testing his chromosomes, his urine and he drew some blood. I'm so excited to get some answers. Yippee!

In keeping with our tradition, someone, I'm not going to name any names :o), pulled my computer off onto the floor and now it is in the shop. I hope to get it back soon. I thought the cord was under the couch but my boys are really wiley.

Last week was a rollercoaster, started good and by wednesday I was calling for help. So Thursday, my friend Brenda came over and helped me with my ironing, bless her. Poor Josh was getting to end of his closet and pulling out clothes I hadn't seen in a while. :o/ Then Friday, my friend Barbara came over for a bit to see the boys and help me around the house. She has a lot of experience with SN and even taught Yuri to sign 'more'. I'm really proud of him.

Josh's parents came this weekend and we had a blast. I really enjoyed our time together and I wish they lived closer. The boys really enjoyed the constant attention. Bohdan absolutley loved Grumpy (thats grandpa) and would speed crawl to him whenever he had the chance.

Well we are going to try church again. Oh my! We shall see how it goes. Just wanted to give you all a quick update. Hopefully I can get you pictures soon. Happy Sunday!